Ever since my daughter was diagnosed with epidermolysis bullosa (EB) in December 2020, I’ve been on a journey. A crusade, really, to understand clinical trials and drug development, connect with nonprofits, and even enroll in a biotechnology management program — all in an effort to find a cure or…
A study across seven European countries found that adults with epidermolysis bullosa (EB) report more pain and significantly worse health-related quality of life than the general population, with severe EB having the greatest day-to-day impact. “These results fill a critical evidence gap, supporting integration of EB-specific data into health…
A baby girl born with severe skin erosions and ulcers was diagnosed with a rare form of epidermolysis bullosa simplex (EBS) that carries the risk of heart disease, according to a case study that highlights the distinct skin features and potential heart risks of this EBS subtype. Caused by…
Becoming educated and informed about epidermolysis bullosa is a good first step. Here you’ll find general information about the disease, including diagnosis, symptoms, and causes.
It helps to know others have been where you are now. Here’s a collection of our columnists’ words of wisdom to help you along on your EB journey.
There is no cure for EB yet, but there are treatments that can help manage the disease. Learn more about the approved and experimental therapies here.
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